Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

Ouchy.

Danni, M.E., Physical Disability, Real Life

Today I went to see my GP. It went okay, though during the appointment I found it increasingly difficult to sit up and eventually couldn’t manage it at all. I was strapped into my wheelchair so was still sitting, I was just bent over at the middle and couldn’t straighten up.

Johan took me home. Every bump was agony. I was crying it hurt so much. Then he had to get me into our flat. It’s upstairs. Johan dragged me up the stairs, with me being unable to help because I was too weak to move anything other than my head. At one point my leg jerked while he was trying to lift me, and I nearly kicked him down the stairs. He managed it, then lay me at the top while he fetched my wheelchair and stuff. He then had to lift me from the floor into my wheelchair, which was difficult as I was like a rag doll. It took a few goes but he managed it, and got me on my bed and my coat off. He even put my eye mask on for me which was wonderful, as I couldn’t move my hands.

After sleeping for a bit I woke up feeling really ill. The carer was here, and asked me if I wanted to go to the toilet. I wasn’t well enough to move, never mind go to the bathroom, so Johan told her on my behalf that I wasn’t well enough. I took meds, and lay in bed for a while with sunglasses and ear defenders on (the karaoke was going on next door and was too noisy). I started feeling better a couple of hours later, had something to eat, and I’m now able to get away with wearing my normal glasses again 🙂

After today I’m not going back to see my GP until I improve. I wouldn’t be surprised if my back was bruised (it certainly feels it) from being dragged up the stairs (and falling down slightly a couple of times). It’s also not fair on Johan to have to try and get someone who weighs more than he does upstairs by himself. This may mean I’m unable to get my tooth removed, which is essential as it’s been causing me a lot of pain for a year now. We’ll see.

I may be feeling okay now, but I’m aware that it’s normal for there to be a delayed effect from this sort of outing, so may be a bit quiet over the next few days. I’m hoping there isn’t though.

Danni

Penguins, Penguins and Penguins

Danni, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life

I like penguins. Tonight was Frozen Planet on BBC1, so I got to watch lots of penguins, both King and Adelie (there were no Emperor ones tonight, I noticed). Today I also bought some penguin stuff- a book called 365 Penguins, some penguin wall stickers, and some purple penguin pyjamas (in a size 14, since I’m losing weight without trying now).

Tomorrow I have the doctors. I am worried about going out, and having to sit up so long. I should probably be considering home visits but I don’t want to yet as I’m not that ill, surely? I’m going to be asking about ambulance transport to the hospital, as going by taxi didn’t work that well last time.

Had a bath this evening, and lovely Icelandic carer told me my hair now goes down to my bum :p She also had to support me a lot more than I normally need.

I need to sort out the living room, as it’s frustrating me that it’s so close to tidy but not quite there. It would take Johan a few minutes, but he won’t do it (or he would have done by now) so I’m going to have to do it. Tidying the cushions on the sofa and putting some rubbish in a bag caused my legs to jerk uncontrollably this morning, followed by being unable to move them at all. It’s the closest I’ve been to waking Johan up, as the pain in my foot was excrutiating and I couldn’t move it. Luckily it wasn’t too bad when I woke up this afternoon.

Danni

Being Tired

Danni, M.E., NaBloPoMo, Physical Disability

First of all, M.E. is not just about being tired. There’s a lot more to it than that, including pain, muscle weakness, over-sensitivity, and lots more. I’m still working (slowly) on a proper blogpost about it. Tiredness is what I’m talking about today, though.

I’m tired. Really tired. All I want to do is sleep, but I did that all day so can’t really now. I woke up when the carer arrived this evening, and was too tired (and in too much pain) to move to even go to the toilet. I was too tired to watch penguins on telly. Too tired to have anything to eat for a couple of hours. This isn’t just normal tiredness, this is complete exhaustion that doesn’t go away no matter how much sleep I get.

On sleep, mine is pretty random now. I sleep for anything from 8-18 hours at a time, then am awake for anything from 8-22 hours. There’s no real rhyme or reason to it. Any attempts to sort it out up to now have failed, mostly because I’m just too ill. When I improve a little bit I’ll be trying to sort it out. Until then I’ll just have to deal with being out of sync with everyone else.

Danni

Feeling Weird

Computers, Danni, Gaming, M.E., NaBloPoMo, Physical Disability, Project 365, Real Life, World of Warcraft

Slept from 12.30am – 2.30pmish today. Johan was sitting on the windowsill when I woke up, waiting for his graphics card to arrive. It did so just before 6pm.

I’m doing my own, very vague method of activity management. It basically consists of trying to get up and sit in my computer chair every day, no matter how ill I feel. I’ve managed it every day for a while now, and it’s not making me worse, just means I sleep more. I try and get back off before I start feeling even more bleh, but it means I get to play some World of Warcraft everyday. I made my Worgan Mage Elisaveta into a Gnome called Tiarna. She’s so small and cute, and best of all she doesn’t make any annoying sniffing noises 😀

I feel weird. The nausea has been worse today, so I’ve been taking the antisickness tablets, which haven’t helped much. My brain has been all over the place, and the pain has been bad even with the painkillers. I “lost” a few hours after waking up just because I felt too rotten to move.

I’ve ordered some stuff from Amazon to be delivered tomorrow, and done a grocery shop with Sainsburys to be delivered on Wednesday. Nothing too amazing, though we have three different types of roast-style meats to try (they were 3 for £10). They also do pre-prepared sweet potato and butternut squash, so when they arrive I’m getting Johan to make me my orange soup 😀

Did get dressed today, in my favourite Diablo 3 t-shirt and a denim skirt. Johan plaited my hair. It’s very loose as he’s not got the hang of keeping hold of all the hair while plaiting it, but it’s not too bad and he’s learning 🙂

Danni

A Lack of Sleep

Danni, M.E., NaBloPoMo, Physical Disability, Real Life

I’ve not been to sleep yet. I woke up about 4.30pm yesterday, and it’s nearly 2pm today. I’m getting tired, and I’m about to sleep, but I was waiting for Johan to wake up to ask him to fill my cup so I could take painkillers. He’s completely zonked though and I think I’m tired enough to sleep without the painkillers now.

During the night I wrote an email to the local carer’s association to ask them to contact Johan about support for him. Hopefully they’ll be able to help. It would be easier if he could initiate contact, but he can’t so we have to work around it. I’m basically trying to care for my carer, and it’s hard. I’ve also noticed I’m still trying to deny how ill I am, though I have accepted that what was a bad day a few months ago is classed as a good day now. A bad day now means no light, touch, sound or anything can be tolerated.

I really need to write that blog post on M.E. Maybe I start it after I’ve got some sleep.